Live a normal life

[Littlecook]

When I was first diagnosed with FND my neurologist told me that the condition doesn't have any cure or any magic medication and I could also have fits but go and live a normal life ,but I wounder how many of us live a normal life ,specially if you are having problems on a daily basis. I also remember him asking my wife if she has photos of me when I'm having a stroke like system, but god I've been taken by ambulance with blue lights with the same symptoms, my own doctor has called for an ambulance how much more prove does anyone need .

I feel totally crappie today so tired ,but I've got the hospital phoning me today with my sleep apnea results I so hope I can get a cpep machine to help me .

Please forgive if my spelling is rubbish. 😭

[Lady4]

Its difficult I know, think they should rephrase that. What were your results? Isn't sleep apnea when you stop breathing briefly in the night, a friend of mine suffers from that.

[HenriettaPoultryfoot]

Hello Littlecook.

In my personal experience with FND, a new or current normal exists. What my life was like before FND is in the past. I try to avoid comparing the old with the new. I struggle with this.

For me, my “normal life” is a constant daily effort to cope with my symptoms. Over time, I have learned how my body responds to certain situations. I know my baseline. I have accepted that nerve pain, fatigue, dizziness, poor balance, vision issues, etc are my normal symptoms. My symptoms are somewhat random, however, there are constants.

My task is to operate within my limits as best as I can on any given day. Those limits vary constantly and randomly. I have found that thoughtful pacing to be helpful. I try to do something each day. Even if that something is to listen to an audiobook while laying in bed. Life is tough when the rules of engagement keep changing.

I try to listen to my body, By doing so, I can keep from amplifying my existing symptoms or suffering with additional ones.

The statement you said your doctor told you about living your normal life is not helpful. I cannot see where it offers direction or instruction on how to accomplish that.

I hope you can discover what your normal life is. I hope you find a way to deal successfully with the symptoms of FND in your life.

As for your need for a CPAP machine, that is relative to sleep apnea. That is a completely different issue.

Henrietta's PoultryFoot

[Shimmyaway]

You are right Littlecook ..there is no normal life with FND, and it doesn't help that there is no 'normal' response from the Health service, such as one specialist who deals with all the symptoms, seeing that they must be interrelated. I am sure they can help you cope with the sleep apnea ..with some sort of breathing device...one small step towards normality at least.